The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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A subtype of ME?

Discussion in 'General Symptoms' started by Reverie, Mar 10, 2015.

  1. Reverie

    Reverie

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    Hi everyone,

    I've had ME / CFS for just over ten years now and have got myself involved in many support groups and charity meetings etc. While I've always believed I have a form of ME I can't help but notice differences to most people.

    My main symptoms are digestive problems, brain fog / cognitive problems and fatigue. All of which seems very common.

    However my digestive problems are mainly upper GI and are generally based around extreme hunger and having to eat all the time. I also find it very hard to feel full. I understand most people with ME find it difficult to eat much and often feel full.

    I also have no muscle or joint pain and no muscle weakness. Something which I understand people often struggle with. I can do strength exercises reasonably well considering how ill I feel and it's my cognitive symptoms that get worse and stop me before my muscle energy.

    I also had my B12 symptoms checked just recently and they were actually quite high at 652 (ref 191 - 663). I know a lot of people have low B12.

    I know there obviously isn't a diagnostic test yet that can be done to confirm ME, though I understand there are markers that are commonly high or low in people with ME, B12 being one. Are there any other tests I could have done by a doctor or specialist to point towards an ME diagnosis. C reactive protein? And immune markers?

    Also does anyone know if a high B12 reading rules out hypochlorhydria?

    Thanks in advance.
     
  2. melamine

    melamine Senior Member

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    @Reverie - this sounds like a very early symptom of mine that I experienced for a couple of years, between 6 and 8 years before I developed post-infectious ME/CFS. In addition to extreme hunger within an hour or two of eating, my stomach would growl intensely. I was in school at the time and it was so uncomfortable and distracting that I was unable to concentrate, my grades plummeted, and I had to take a break from studies and do remedial work later.

    I had a lot of toxic dental mercury exposure and several rounds of antibiotics by that time and have wondered in retrospect if they had anything to do with it. I was also found years later to be highly sensitive to dairy. It's possible I had developed this sensitivity early on and that it was also contributing to symptoms. It was typical for me to have cereal with milk for breakfast and the pattern of the intensity of symptoms, as I recall, would fit with something in that meal contributing to the symptoms. It is very likely that Candida was already a problem at that time, as it would be rather expected under the circumstances.

    Hope this helps.
     
  3. Sidereal

    Sidereal Senior Member

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    Have you ruled out H. pylori?
     
    Mij likes this.
  4. ukxmrv

    ukxmrv Senior Member

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    Where are you located Reverie?

    The reason I am asking is that there are a very limited number of doctors around the world with an interest in ME and CFS.
     
  5. Reverie

    Reverie

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    Thank you everyone for your replies.

    So do you think cutting out dairy and mercury exposure stopped it?

    It seems to be something I keep coming back to. I've had it tested for on the NHS maybe three times now, though all have come back negative (It was a stool test). However I did do a metametrix CDSA which came back positive for h pylori. I've taken triple therapy twice now. The first time for 10 days which did improve those symptoms. However they started to get worse again recently so I tried a 7 day course which made little difference.

    I live in Sheffield in the UK. The only good ME / CFS specialist I've seen is Dr Myhill, who has been very helpful.
     
    justy and ukxmrv like this.
  6. melamine

    melamine Senior Member

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    @Reverie - my mercury exposure was much, much greater over subsequent years and I didn't learn of my problem with dairy either until decades later. I don't know what stopped it other than having to leave school at the time. Aside from whatever can be surmised from that - less stress maybe - probably my body adjusted to the new pathology by creating another one.
     
  7. Sidereal

    Sidereal Senior Member

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    The second time, did you try the same antibiotics as the first time? If the bacterium wasn't fully cleared up by the first course it could have become resistant to the antibiotics.
     
  8. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    For years I had extreme hunger and had to eat as soon as it developed, otherwise I would start to feel nauseous. I also got a lot of upper-right abdominal pain and I suspected liver or gall bladder problems.

    But once I switched to a leaky-gut diet, my appetite normalised, and so has my weight, as well as muscles strengthening and my bowel health improving a lot.

    That said, exercise for the sake of it is a very bad idea with ME, IMO. I can't even manage all the things I need to do, let alone extra exercise on top! We need to pace activity carefully, ideally with a heart-rate monitor, staying within limits imposed by the illness, and resting - probably a lot more than we want to.

    I don't have much pain either, just dull aching after excessive usage and as part of post-exertional malaise.

    I still get upper-right abdominal pain after too much exertion, which I think is due to the liver becoming overloaded with the excess lactic acid/lactate that exertion produces in us. Like most of us, I have great difficulty staying within my limits. It requires enormous and continuing self-discipline.

    There are forums here on most, possibly all of your areas of interest. Try some site searches, and looking at the list of forums on the main forums page.
     
  9. Valentijn

    Valentijn Senior Member

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    The two-day CPET should be pretty conclusive. But since you don't seem to have PEM (very different from fatigue), it really doesn't sound much like ME/SEID. This can be a common problem in the UK, since diagnostic criteria are rather sloppy there.
     
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  10. Reverie

    Reverie

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    CPET?

    I do have PEM, if you are referring to post exertional malaise? If I push my limits mentally or physically my health takes a turn downwards over the coming days / weeks.
     
    justy likes this.
  11. Reverie

    Reverie

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    That's interesting about your leaky gut diet. I'm currently following paleo and have found it helps. Do you have a link or any information on the diet you are following?

    Thanks
     
  12. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Here is an article about CPET.
     
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    It's in the information section of my profile. There is a whole forum here on leaky-gut diets and related issues.
     
  14. Reverie

    Reverie

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  15. justy

    justy Donate Advocate Demonstrate

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    Hi Reverie - welcome! I don't think your post highlights many differences at all. I am not a reduced but increased appetite person and don't feel full quickly either. Muscle pain is not a bog problem for me either, but this last couple of years the joint pain has kicked in more and more PEM type flu pain all the time these days than I used ot have.

    I have spoken to many patients who have PEM more from mental or physical things. I have both quite severely making life very difficult, but there were times in the past when this was quite different.

    I don't think your B12 IS really that high - its probably at an optimum sort of point. after injecting daily for 18 months mine was over 2,000 - but my Gp was not the least bit concerned - I see you have seen Dr M - did she prescribe B12 injections for you?
     
  16. rosamary

    rosamary Senior Member

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    Have you seen a gastroenterologist ?
     

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